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OPINION:  You might think being told I had a rare and incurable disability in my twenties was very bad news, but after the grief...

A 23-year-old woman who has battled a rare, incurable disease for the last four years has died. Ruby Hill's body has given up the fight against gastroparesis, a disease that paralysed her stomach and meant she was not able to absorb nutrients. Whangarei woman with rare gastroparesis dismissed by doctors The 23-year-old has struggled to keep food down throughout her journey with the incurable illness, and last month the young adult's weight dropped to just 22kg.   Ruby's mothe

WARNING: Confronting images Ruby Hill weighs just 22kg, cannot digest food and has been sent home by doctors who say she's "at the end of the road." Though in crippling pain, the 23-year-old has been refused palliative care because she remains on IV fluids which provides her body with liquid but no nutrition. "Basically I was sent home to starve to death," she said. "I have no extra home care or anything, so no hospice, no pain relief. I'm pretty much just living off fresh ai

On Friday, 23-year-old Whangarei woman Ruby Hill was sent home from hospital to die. A rare, incurable condition called Gastroparesis has paralysed her stomach since 2015, meaning nutrients from food stopped absorbing into her body. She was discharged from hospital after medical professions exhausted all available treatment options, with no success. Gastroparesis is caused by damage to the vagus nerve, which usually controls contractions of the stomach muscle, pushing food in

New Zealanders with a condition more common than autism are regularly discriminated against by the country's health system, an advocate says. And it's because of a lack of funding and awareness of Ehlers-Danlos syndrome, the Ehlers-Danlos Advocacy Organisation lead co-ordinator Tracey Jourdain said. Ehlers-Danlos syndrome [EDS] is a hereditary, overlapping group of connective tissue disorders that leads to widespread and seemingly unrelated symptoms. It can take years for suf

Dr Rachel Palmer's life is in ruins. The 47-year-old Christchurch criminologist turned style consultant who has a PhD in criminology, master's degree in applied criminal justice and a double degree in psychology and education, is largely bedridden with a permanent catheter, faecally incontinent and suffers from excruciating pain. Palmer was diagnosed with hypermobility and then classical Ehlers-Danlos Syndrome (EDS) at 38, after years of stress fractures, spinal problems, par

Warning: Some readers may find the photos used in this story disturbing. A young woman with intestinal pain so severe she can't eat has been told by psychiatrists that either she is faking her symptoms or that her mother is causing them. It wasn't until Georgie Ferris' weight dropped to 33 kilograms and she began planning her funeral that doctors treated her. The Nelson 22-year-old has Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder that can lead to gastroi

Stephanie Aston was told the debilitating illness she experienced existed in her head. She rejects that and says the diagnosis has adversely affected the care she gets, writes Natalie Akoorie. Stephanie Aston had never met 'Doctor A' before he suggested her debilitating illness was in her head. At 25 she was flatting in Mt Albert, Auckland when the effects of Ehlers-Danlos syndrome [EDS] began to take hold in October 2015. Like many adults with EDS, Aston did not know she had

Gendi Roberts was just eight years old when she received the life-changing news that she had Ehlers Danlos Syndrome. Twelve years later...